Podcasts about prader willi

One of the hallmarks of the rare genetic disorder Prader-Willi syndrome is hyperphagia, an insatiable desire to eat. Households with someone with Prader-Willi syndrome often have to take measures to restrict access to food, such as locking refrigerators, pantries, and trash cans. They must also deal with the complex behavioral challenges associated with the condition. Earlier this year, Soleno Therapeutics won approval for VykatXR, the first FDA-approved therapy for treating hyperphagia. We spoke to Anish Bhatnagar, CEO of Soleno Therapeutics, about Prader-Willi syndrome, its therapy to treat the condition, and the significance of having a medicine that can address hyperphagia associated with the disorder.

Hello Brave Friends! Welcome to today's expert episode, #219. These are conversations with experts in fields relevant to caregiving parents. On this episode we have Tammie Penta PD, a retired Police Sergeant and Brave Mom to an adult son with Prader-Willi syndrome who trains police departments all over the country to interact safely with adults living with PWS and other intellectual disabilities.In this conversation, Jessica Patay and Tammie Penta PD, discuss the importance of preparing families with developmental disabilities for interactions with law enforcement. Tammie shares her personal experiences and insights on how to effectively communicate with law enforcement, engage with neighbors, and prepare for a potential crisis. The discussion emphasizes the need for proactive measures, such as creating a blue form for quick reference during emergencies, and fostering relationships with local law enforcement to ensure better outcomes for individuals with disabilities.Retired Sergeant Tammie Penta worked for the Tucson Police Department where she was a police officer for over 27 years, with the last 20 as a sergeant. Tammie was a detective sergeant for the Elder Abuse Task Force, which included investigations of vulnerable adults, the Child Abuse/Homicide Unit, Special Investigations and Aggravated Assault Unit. Additionally she was the training supervisor responsible for new officers coming into law enforcement and completed her career as the administrative supervisor for the largest division in the city.Find more information about Tammie Penta PD here.Download Blue Forms here and here.This episode was generously sponsored by Pediatric Minds.Find our first book from We Are Brave Together here.Find full episodes from Season 7 and clips from Season 8 on Youtube here.Brave Together Parenting is the podcast for We are Brave Together, a not-for-profit organization based in the USA. The heart of We Are Brave Together is to strengthen, encourage, inspire and validate all moms of children with disabilities and other needs in their unique journeys. JOIN the international community of We Are Brave Together here. Donate to our Retreats and Respite Scholarships here. Donate to keep this podcast going here. Can't get enough of the Brave Together Podcast? Follow us on Instagram or on Facebook. Feel free to contact Jessica Patay via email: jpatay@wearebravetogether.org If you have any topic requests or if you would like to share a story, leave us a message here. Please leave a review and rating today! We thank you in advance! Disclaimer

À l'occasion de sa revue de presse, jeudi, Paul Arcand revient sur l'histoire d'une jeune femme déficiente intellectuelle qui a passé huit jours en prison pour avoir volé de la nourriture. Âgée de 24 ans, Florence est atteinte du syndrome de Prader-Willi, une maladie génétique rare qui provoque une sensation de faim constante. «Elle vit avec sa mère, mais il arrive un moment où sa mère n'est plus capable de s'en occuper. Elle est aussi accompagnée par les services sociaux. On lui trouve une place dans une ressource intermédiaire. Très rapidement, la personne responsable de cette ressource dit que c'est trop complexe [...] Conclusion: ça ne fonctionne pas et on s'entête à ne pas l'envoyer dans une ressource plus adaptée à ses besoins.» Autres sujets abordés: Mark Carney a annoncé une baisse d'impôt à compter du 1er juillet, mais ne présentera pas son budget avant l'automne; À Montréal, la multiplication des chantiers décourage les restaurateurs; Les mots «pelleteux de nuages», «chill» et «cône orange» sont maintenant dans le Petit Robert. Voir https://www.cogecomedia.com/vie-privee pour notre politique de vie privée

Jessica Patay is a full-time caregiver to her son with Prader-Willi syndrome—and the founder of We Are Brave Together, a global support network for caregiving moms. In this episode, she joins Heather to talk about the emotional toll of rare parenting, why self-care isn't a luxury, and what it really takes to show up for yourself when you're constantly showing up for everyone else. They get honest about burnout, identity loss, and the power of community when you feel like you're running on empty. If you've ever felt like you're disappearing inside the role of caregiver, this conversation is for you. FIND JESS:

On this week's episode, Chris Garabedian, Tim Opler, Bruce Booth, and Sam Fazeli discuss the current investor mood, a PIPEs retrospective, and the contraction of new startups. The episode opens with a conversation on the biotech market updates, which have been driven by economic uncertainty and shifting investor sentiment, noting that macroeconomic factors continue to weigh on performance of biotech stocks in the market. Regulatory discussion centers on recent HHS personnel cuts, and the confirmations of FDA and NIH leaders. The conversation shifts to data with Soleno Therapeutics' Prader-Willi drug approval, oncology readouts, and presentations at the European Lung Cancer Congress 2025. Tim Opler also discussed findings from a recent aging report. On the global front, China's role in biotech continues to expand, with an increasing share of large pharma molecules originating from the country. The episode concludes with a look at obesity drug deals, including a major partnership with a China-based biotech and a preclinical asset with a novel mechanism targeting satiety and energy expenditure. *This episode aired on March 28, 2025.

Good morning from Pharma and Biotech daily: the podcast that gives you only what's important to hear in Pharma e Biotech world. The Department of Health and Human Services, led by Secretary Robert F. Kennedy Jr., has revealed intentions to reduce 10,000 positions and restructure departments. The appointment of vaccine critic David Geier to investigate vaccine safety within the CDC has also been announced. Soleno has recently obtained FDA approval for a medication designed to address hyperphagia in Prader-Willi syndrome patients. Meanwhile, Johnson & Johnson's combination therapy for lung cancer has displayed encouraging outcomes. A power struggle at Aurion has resulted in Alcon taking control, amidst allegations of impeding Aurion's IPO plans. Opportunities in the biopharma industry are available at the United States Pharmacopeia, alongside updates on biopharma layoffs and industry advancements. That's all for today's episode. Stay tuned for more essential news from the world of Pharma and Biotech. Thank you for listening.

In this episode of IDD Health Matters, Dr. Craig Escudé sits down with Chris Helfrich, a dedicated nurse and an integral member of the Developmental Disabilities Nurses Association, live from the DDNA annual conference in New Orleans. Chris shares her unexpected journey into the field, her experiences navigating healthcare for individuals with developmental disabilities, and the critical need for better education and training for healthcare providers. Chris also discusses her groundbreaking work in Illinois, where she has been instrumental in opening specialized community-based homes for individuals with Prader-Willi syndrome. She highlights the challenges of healthcare disparities, the importance of structured environments for individuals with unique needs, and the inspiring impact of these initiatives on both individuals and staff. Tune in for an insightful conversation about the evolving landscape of healthcare for people with IDD, the strides being made in nursing education, and what the future holds for better, more inclusive healthcare solutions.

In this episode of IDD Health Matters, Dr. Craig Escudé sits down with Chris Helfrich, a dedicated nurse and an integral member of the Developmental Disabilities Nurses Association, live from the DDNA annual conference in New Orleans. Chris shares her unexpected journey into the field, her experiences navigating healthcare for individuals with developmental disabilities, and the critical need for better education and training for healthcare providers. Chris also discusses her groundbreaking work in Illinois, where she has been instrumental in opening specialized community-based homes for individuals with Prader-Willi syndrome. She highlights the challenges of healthcare disparities, the importance of structured environments for individuals with unique needs, and the inspiring impact of these initiatives on both individuals and staff. Tune in for an insightful conversation about the evolving landscape of healthcare for people with IDD, the strides being made in nursing education, and what the future holds for better, more inclusive healthcare solutions.

In this heartfelt episode, Katie Webb, a world-renowned wedding planner, wife, and mother of two children with disabilities shares her incredible journey of adoption and parenting. Katie opens up about her two sons' diagnoses—one with Down syndrome and the other with Prader-Willi syndrome—and what daily life looks like as she navigates the challenges and rewards of raising children with special needs. She discusses the constant battle for services and support from the city and state while shedding light on the beauty and growth her children bring into her life. Tune in for an eye-opening conversation about love, resilience, and the disability community. Learn more about your ad choices. Visit megaphone.fm/adchoices

Send us a textCan genetics alone determine your battle with obesity, or is there more to the story? Join us as we crack open the complex world of obesity, unearthing the myriad factors that influence weight gain and appetite regulation. From family history to rare genetic mutations like Prader-Willi and Bardet-Biedl syndromes, we explore how your genetic makeup can predispose you to obesity, but isn't the only piece of the puzzle. Listen as we dissect how environmental influences and lifestyle choices can either exacerbate or mitigate these genetic risks, allowing for a more nuanced understanding of why some people face greater challenges with weight than others.We also venture into the intriguing territory of epigenetics, exploring how external factors can alter gene expression, thus impacting weight and metabolic processes. Discover how mindful decisions—like a balanced diet, consistent physical activity, and effective stress management—can potentially counteract genetic predispositions. This episode aims to provide you with a comprehensive grasp of obesity's multifaceted nature, equipping you with the knowledge to make informed, empowered decisions about your health and well-being. Tune in for a conversation that promises to redefine your perspective on genetics and obesity. Support the showAre you feeling stressed, tired, or Metabolism imbalanced? Take advantage of our free mindful steps to help improve your well-being.ENJOY ONE OF our Books Mindful Ways Health Wealth & Life https://stan.store/MindfullyintegrativeAsk Us for help with Medical Weight Loss & Improve Metabolic HealthWww.mindfullyintegrative.com Let's Work on Your Optimal Wellness Journey!Sign Up For Discovery Callhttps://stan.store/MindfullyintegrativeEnjoy the Show and Get Bonus Episodes Subscribe For Just $4 a month Enjoy one of Our Mindful Book Collections HERE Check Out our YouTube Channel Join Our Mindfully Integrative Private Facebook CommunityGet 15% off Pharmaceutical Grade...

Jessica Patay, a reformed perfectionist and dedicated caregiving mother, provides compassionate support and resources to other moms caring for children with disabilities or unique needs. In this episode of the Happy Healthy Caregiver podcast, Jessica shares how she manages and supports her son Ryan, who has a rare genetic condition called Prader-Willi syndrome, while maintaining her own well-being. We discussed helpful and unhelpful language from friends and family and explore the various ways caregiving mothers can find support through Jessica's community, book, podcast, and retreats. Jessica also highlights the difference between self-care and self-comfort. Show notes with product and resource links: https://bit.ly/HHCPod192 Receive the podcast in your email here: http://bit.ly/2G4qvBv Order a copy of Elizabeth's book Just for You: a Daily Self Care Journal: http://bit.ly/HHCjournal For podcast sponsorship opportunities contact Elizabeth: https://happyhealthycaregiver.com/contact-us/ The Happy Healthy Caregiver podcast is part of the Whole Care Network. Rate and Review the podcast: https://bit.ly/HHCPODREVIEW

Jessica Patay, a reformed perfectionist and dedicated caregiving mother, provides compassionate support and resources to other moms caring for children with disabilities or unique needs. In this episode of the Happy Healthy Caregiver podcast, Jessica shares how she manages and supports her son Ryan, who has a rare genetic condition called Prader-Willi syndrome, while maintaining her own well-being. We discussed helpful and unhelpful language from friends and family and explore the various ways caregiving mothers can find support through Jessica's community, book, podcast, and retreats. Jessica also highlights the difference between self-care and self-comfort. Show notes with product and resource links: https://bit.ly/HHCPod192 Receive the podcast in your email here: http://bit.ly/2G4qvBv Order a copy of Elizabeth's book Just for You: a Daily Self Care Journal: http://bit.ly/HHCjournal For podcast sponsorship opportunities contact Elizabeth: https://happyhealthycaregiver.com/contact-us/ The Happy Healthy Caregiver podcast is part of the Whole Care Network. Rate and Review the podcast: https://bit.ly/HHCPODREVIEW

Don't miss this encouraging and inspiring episode featuring Jessica Patay, founder of We Are Brave Together. As the mother of a child with Prader-Willi disease (https://www.fpwr.org/), Jessica founded We Are Brave Together in 2017 to be a safe place for women with children with any issue or diagnosis. We Are Brave Together is a place for women to feel seen, heard, validated, and understood through their podcast, retreats, and support groups, known as connection circles.  There are presently over 20 connection groups worldwide that support their mission to preserve and protect the mental health of caregiving moms. Jessica openly shares the challenges of being a caregiving mom and the perseverance, tenacity, dedication, sacrifice, and love caregiving moms exhibit. Jessica has also compiled caregiving mom stories into a book, Becoming Brave Together (https://www.amazon.com/Becoming-Brave-Together-Extraordinary-Caregiving-ebook/dp/B0D123VCRS). Jessica wants moms to pick up this book and feel seen, heard, and validated. She also hopes the book will help others open their eyes to the challenges caregivers face.

In this episode of the Brain & Life podcast, co-host Dr. Katy Peters is joined by Jessica Patay, mother, caregiver, and founder of the nonprofit We Are Brave Together. Jessica discusser her son's diagnosis with a rare genetic neurologic condition called Prader-Willi Syndrome and how it led her to found an organization whose mission is to preserve and protect the mental health of caregiving moms of disabled and neurodiverse children. Dr. Peters is then joined by Dr. Emily De Los Reyes, attending pediatric neurologist at Nationwide Children's and Professor of Clinical Pediatrics and Neurology at The Ohio State University College of Medicine. They discuss exactly what Prader-Willi syndrome is, how it's diagnosed and treated, and what the future looks like for patients and their families.   Additional Resources We Are Brave Together How Parents Advocate for Their Children with Rare Diseases These Parents are Giving Their Teenager a Life of Adventure Despite Rett Syndrome Sibling Caregivers Share Rewards and Challenges   Other Brain & Life Episodes on this Topic Resiliency and Caregiving with Janet Fanaki Journalist Richard Engel on Parenting a Child with Rett Syndrome Gavin McHugh is Building an Acting Career and a Community with Cerebral Palsy   We want to hear from you! Have a question or want to hear a topic featured on the Brain & Life Podcast? ·       Record a voicemail at 612-928-6206 ·       Email us at BLpodcast@brainandlife.org   Social Media:   Guests: Jessica Patay @wearebravetogether; Dr. De Los Reyes @nationwidekids Hosts: Dr. Daniel Correa @neurodrcorrea; Dr. Katy Peters @KatyPetersMDPhD

Faça o cadastro no portal da ALMG e opine sobre o projeto de lei que institui a data comemorativa no calendário mineiro.

Send us a Text Message.I am back this week with a lovely conversation with the wonderful Jessica Patay, Founder & Executive Director of the non profit We Are Brave Together. In this episode we talk about the importance of respite as a caregiver, her experience as a mother and caregiver to her son, Ryan, who is living with Prader-Willi syndrome, how her non profit came to be, as well as the new anthology they recently released called "Becoming Brave Together," along with so much more. Happy listening, friends!Buy Becoming Brave Together on amazonLearn more about We Are Brave TogetherFollow them on instagramGet your FREE Positive Affirmations for the Medical Parent PDF here!https://www.confessionsofararediseasemama.com/Learn more about my children's fight with ASMD and donate to our cause:https://www.saveromanandstella.com/Follow on instagram: https://www.instagram.com/confessionsofararediseasemama/

Bob and Kim sit down with Jessica Patay, who recently published 'Becoming Brave Together'. In this episode, Jessica opens up about her journey as a first-time author, sharing the heartfelt stories of caregiving moms. She shares her personal story of raising a child with Prader-Willi syndrome and the inspiration to compile an anthology from 22 writers, all caregiving moms, sharing stories about extreme and extraordinary caregiving of their children. Explore the challenges she faced, the lessons learned, and the profound impact her book aims to make. Connect with Jessica: @wearebravetogetherCheck out Jessica's book: https://www.wearebravetogether.org/book Connect with Bob: @bobgoff Connect with Kim: @kimberly.stuart.writes---Learn more about Writing Coaching with Bob and Kim: bobgoff.com/writing-coachingCome join Bob and Kim at the Oaks for a Writer's Workshop. Wherever you are in the writing process they are ready to help you figure out your next steps! Visit bobgoff.com/events to learn more.

Bob and Kim sit down with Jessica Patay, who recently published 'Becoming Brave Together'. In this episode, Jessica opens up about her journey as a first-time author, sharing the heartfelt stories of caregiving moms. She shares her personal story of raising a child with Prader-Willi syndrome and the inspiration to compile an anthology from 22 writers, all caregiving moms, sharing stories about extreme and extraordinary caregiving of their children. Explore the challenges she faced, the lessons learned, and the profound impact her book aims to make. Connect with Jessica: @wearebravetogetherCheck out Jessica's book: https://www.wearebravetogether.org/book Connect with Bob: @bobgoff Connect with Kim: @kimberly.stuart.writes---Learn more about Writing Coaching with Bob and Kim: bobgoff.com/writing-coachingCome join Bob and Kim at the Oaks for a Writer's Workshop. Wherever you are in the writing process they are ready to help you figure out your next steps! Visit bobgoff.com/events to learn more.

Bob and Kim sit down with Jessica Patay, who recently published 'Becoming Brave Together'. In this episode, Jessica opens up about her journey as a first-time author, sharing the heartfelt stories of caregiving moms. She shares her personal story of raising a child with Prader-Willi syndrome and the inspiration to compile an anthology from 22 writers, all caregiving moms, sharing stories about extreme and extraordinary caregiving of their children. Explore the challenges she faced, the lessons learned, and the profound impact her book aims to make. Connect with Jessica: @wearebravetogetherCheck out Jessica's book: https://www.wearebravetogether.org/book Connect with Bob: @bobgoff Connect with Kim: @kimberly.stuart.writes---Learn more about Writing Coaching with Bob and Kim: bobgoff.com/writing-coachingCome join Bob and Kim at the Oaks for a Writer's Workshop. Wherever you are in the writing process they are ready to help you figure out your next steps! Visit bobgoff.com/events to learn more.

Tiszperger Noémi, a Magyar Prader-Willi-Szindróma Egyesület alapítója és érintett szülő. Noémivel a Prader-Willi-szindróma bonyolult tüneteiről, a csillapíthatatlan evéskényszerről és a hozzá kapcsolódó társbetegségekről beszélgetünk. Emellett a családi napjuk fontosságáról is szót ejtünk, amelynek célja, hogy minél több emberhez eljuttassa ennek a genetikai rendellenességnek az ismeretét, elősegítve a társadalmi párbeszédet és érzékenyítést. Az egyesület célja, hogy lakóotthont építsenek az érintett gyerekek számára.A Sláger FM-en minden este 22 órakor a kultúráé a főszerep S. Miller András az egyik oldalon, a másikon pedig a térség kiemelkedő színházi kulturális, zenei szcena résztvevői Egy óra Budapest és Pest megye aktuális kult történeteivel. Sláger KULT – A természetes emberi hangok műsora.

Dr. Dan interviews Jessica Patay, the Founder/Executive Director of We Are Brave Together (a supportive community for moms of children with disabilities), host of the podcast Brave Together with Jessica Patay, and author/editor of the new anthology Becoming Brave Together. Jessica Patay is mother to a 20-year-old son with Prader-Willi syndrome, a rare genetic disorder. On this episode, Dr. Dan and Jessica discuss her parenting journey, her work to create a community for mothers, and her anthology Becoming Brave Together which gathers heroic and extraordinary caregiving stories written by other mothers of children with disabilities.  Jessica is passionate about encouraging and serving caregiving moms everywhere and reminding each mother “You are not alone.”  For more information visit www.wearebravetogether.org  Email your parenting questions to Dr. Dan podcast@drdanpeters.com (we might answer on a future episode).  Follow us @parentfootprintpodcast (Instagram, Facebook) and @drdanpeters (X).  Follow @exactlyright on Instagram. Please listen, follow, rate, and review on Apple Podcasts, Spotify, or wherever you listen to podcasts. Please support our podcast by shopping our latest sponsor deals and promotions at this link: https://bit.ly/4bqTWJ2 For more information: www.exactlyrightmedia.com  www.drdanpeters.com Learn more about your ad choices. Visit megaphone.fm/adchoices

When Eliza was diagnosed with Prader-Willi syndrome, the flood of emotions from anger to isolation was overwhelming. On this episode of Parenting Impossible, join Annette as she opens up about her personal journey and the moments that shaped her path in special needs parenting. Annette welcomes Julie Foge, a fellow special needs mom and founder of the Leaning Into Love website, to share her experiences and insights. Julie and Annette cover advocating for their children amid the chaos of daily responsibilities, underscoring choosing battles and seeking support. Julie's mission, inspired by her child's rare disease and her background as a teacher, is to create a nurturing space for parents and caregivers. With her husband's medical expertise adding another to their conversation, they dive into practical tips for managing the NICU experience, from using your voice effectively to reducing decision fatigue through community support. Julie and Annette also tackle special education advocacy, offering strategies to foster productive collaboration with educators. Discover how simple tools like an “All About Me” page can help teachers understand your child's unique needs. In this episode, you will hear: The emotional rollercoaster of parenting a child with special needs Dealing with a diagnosis of Prader-Willi syndrome and feelings of isolation The importance of advocacy in navigating daily challenges  The need for support systems for both children and parents Strategies for managing a NICU stay, including effective communication with medical staff Leveraging community support to reduce decision fatigue Techniques for successful special education advocacy, nurturing collaboration with educators, and creating personalized tools like an “All About Me” page Julie's dual perspective as a teacher and a special needs mom Insights from Julie's husband's medical background with practical advice for parents Overcoming the transition from NICU to home care, dealing with decision-making, and finding local resources for ongoing support Resources from this Episode Leaning Into Love website: www.leaningintolove.com Facebook: www.facebook.com/juliefoge Instagram: www.instagram.com/juliefoge LinkedIn: www.linkedin.com/in/julie-foge-88418b30a Pinterest: www.pinterest.com/leaningintolove Follow and Review: We'd love for you to follow us if you haven't yet. Click that purple '+' in the top right corner of your Apple Podcasts app. We'd love it even more if you could drop a review or 5-star rating over on Apple Podcasts. Simply select “Ratings and Reviews” and “Write a Review” then a quick line with your favorite part of the episode. It only takes a second and it helps spread the word about the podcast. Episode Credits If you like this podcast and are thinking of creating your own, consider talking to my producer, Emerald City Productions. They helped me grow and produce the podcast you are listening to right now. Find out more at https://emeraldcitypro.com Let them know we sent you.

#160: Clint Hurdle is a former Major League Baseball player and manager. He spent 9 seasons as the Manager for the Pittsburgh Pirates. Over his tenure in Pittsburgh he led the Pirates to multiple playoff appearances. In 2013, only his third season as manager, he led the Pirates to their first winning season and playoff appearance since 1992. He also won the award for National League Manager of the Year. Prior to his time in Pittsburgh he was also the hitting coach for the Texas Rangers during the 2010 season where he helped all star players like Josh Hamilton and Michael Young, advance to the World Series. For 8 seasons he was the manager of the Colorado Rockies where he led them to their first ever NL pennant and World Series appearance. Before he stepped into managing he spent 12 seasons playing professional baseball. In 1975 he was drafted in the first round of the MLB draft, 9th overall, to the Kansas City Royals. In 1978 he was featured on the cover of Sports Illustrated as “This Years Phenom.” He played for the Kansas City Royals, Cincinnati Reds, New York Mets, & the St. Louis Cardinals. On the show Clint shares his story of grown-up, the influence of his parents, playing major league baseball, stories from his time managing the Rockies and Pirates, adapting, the importance of passion, Mudita, 3 key questions every coach and leader should ask, being a good husband and father, faith, and much more. For more on Clint, his encouraging daily emails, and his hot stove dinner fundraiser for Prader-Willi syndrome check out clinthurdle.com as well as all social platforms. We will have a link in the show notes, social media posts, and YouTube for links to Clints platforms. Enjoy the show! 

Calling all big-word fans, this one's for you! A neuroscientist and actress from a little show you may have heard of…The Big Bang Theory's Mayim Bialik joins the Lautners to discuss her journey with mental health, both in and out of the spotlight. She explains her thesis dissertation, which, (grab a dictionary), was: "Hypothalamic regulation in relation to maladaptive, obsessive-compulsive, affiliative and satiety behaviors in Prader–Willi syndrome". She then dives into her early career as a teen actor and her home life surrounded by mental illness and addiction. She and Taylor bond over being Enneagram 4s, before she highlights two key tools that have helped her mental health: identifying food triggers and somatic work. Lastly, the Lautners ask her for advice on continued success in the mental health podcast space, as she's hosted her popular podcast, Mayim Bialik's Breakdown, since 2021.  Be sure to follow Mayim @missmayim and listen to Mayim Bialik's Breakdown where ever you get your podcasts: https://linktr.ee/BialikBreakdown  Thanks to our awesome sponsor for supporting this episode!   CeraVe: To learn more about nominating a nurse who has profoundly impacted your life, visit CeraVe.com/Nurses or DAISYfoundation.org!    To email us your questions or share your story, you can reach out to lautner.thesqueezepodcast@gmail.com. Be sure to rate, review, and follow the podcast so you don't miss an episode! Plus, follow us on Instagram, @thesqueeze and personally @taylautner and @taylorlautner + on TikTok @thesqueezepodcast    To learn more from The Lemons Foundation, follow @lemonsbytay on Instagram and visit lemonsbytay.com  Learn more about your ad choices. Visit megaphone.fm/adchoices

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Imagine spending years trying to get pregnant, following every protocol, and struggling through the heartache of not being able to build your family. Then, finally, after all the difficulty, you get to have two beautiful twin girls, and you think maybe, “This is it! The struggle is over!” But, because life isn’t always fair, you find out soon after that one of your twins has a life-altering rare disease. This is the story of today’s guest, Dr. Annie Kuo. She shares her journey from infertility through the diagnosis of her 15-month-old daughter, Kenzie, with Prader-Willi syndrome. She shares how her experience as a physician shaped how she navigated her daughter’s care but didn’t necessarily make the whole process easier. And she vulnerably describes what it felt like to just never catch a break, and how those experiences have shaped the way she views life today. This is one story episode you cannot miss, and a big shout out to our sponsor Functional Formularies who made this episode possible! Links: Visit the Functional Formularies website and get assistance in working with your insurance company to provide their top-tier nutrition to your tube-fed child! Join us for The Family + Friends Rare Disease Day Fundraiser and see how you can help The Rare Life continue for years to come! Follow Annie on Instagram @dranniekuo! Follow us on Instagram @the_rare_life! Donate to the podcast or Contact me about sponsoring an episode. Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join! Follow the Facebook page. Join the Facebook group Parents of Children with Rare Conditions. Access the transcript on the website here. And if you love this podcast, please leave us a rating or review in your favorite podcast app!

Get your seatbelt on. Jenna is a vibrant mama to Josh. She is a badass with very little filter, especially when she talks about her life's #1 passion: fighting for her son's rights and well-being. Jenna has been through so much with her son's disorder, a rare neuro-genetic disorder that occurs in one in 15,000 live births. According to the Angelman Syndrome Foundation, “symptoms and characteristics with other disorders including autism, cerebral palsy and Prader-Willi syndrome. Due to the common characteristics, misdiagnosis occurs often.” Another common symptom, which we talk about in-depth, are seizures. They suck, they're scary, and they are a part of Jenna's reality as Josh's mama. We discuss an alternative form of medication that has changed everything for Josh and his seizures: CBD, a chemical found in marijuana. There's lots to unpack in this episode. Josh is an angel and so is his mom for sharing their story. FOLLOW JENNA https://www.instagram.com/jennuh_leann/ FOLLOW US https://www.instagram.com/realmotherfuckerspodcast/ https://www.youtube.com/@RealMoFosPodcast https://patreon.com/RealMotherFuckersPodcast DISCLAIMER This podcast has mature language and content. Moms ears only — don't have this one on with your kids in the room. These are our opinions and experiences as moms, take what you like, or leave it. Don't be thinking we're telling you what to do. Seek professionals, do your research, and call the experts for help. --- Support this podcast: https://podcasters.spotify.com/pod/show/realmotherfuckers/support

Aurora Rustarazo, directora y psicóloga de la asociación 'Residencia Mil Diferencias´, nos habla sobre la enfermedad Prader Willi.

Con @IBmaprof y @AESPW

Hello Brave Friends! On this story episode we are exploring the vital yet (especially in our community) illusive act of taking a break. Our storyteller is Krysten Leighty whose daughter Lana, was diagnosed with Prader-Willi syndrome, and found early on that the “go go go” mentality of the medical world was counterintuitive to her instincts, as a mother, to just stop and be present with her child.Krysten Leighty is an artist of many talents, an ambivert, empath, a work in progress human, a partner in love and a wild mama inspired by nature and traveling the world. She is a fierce advocate for her beautiful daughter who just so happens to be rare.JOIN the international community of We Are Brave Together here.Donate to our Retreats and Respite Scholarships here.Donate to keep this podcast going here.Can't get enough of the Brave Together Podcast?Follow our Instagram Page @wearebravetogether or on Facebook.Feel free to contact Jessica Patay via email: jpatay@wearebravetogether.orgIf you have any topic requests or if you would like to share a story, leave us a message here.Please leave a review and rating today! We thank you in advance!Disclaimer

Programa completo de 'Más de uno' con Carlos Alsina. En las primeras horas, Miguel Ondarreta, Juan Carlos Vélez, Elena Bueno, Sara Iturbide, Manuel Pecino y María Gómez Prieto repasan las noticias regionales, nacionales e internacionales. Marta García Aller hace su reflexión diaria y en La España que madruga repasamos los principales titulares de la jornada. En la tertulia con Toni Bolaño, Pilar Gómez, Antonio Caño, Marta García Aller y Rubén Amón comentamos la actualidad política. Además, Alsina entrevista a Francisco Javier Ocón, el exsecretario general del PSOE de La Rioja, quien defiende su posición en contra de la ley de amnistía. En la segunda parte, con Begoña Gómez de la Fuente, invitamos a Roberto Leal a charlar con nuestros cómicos Agustín Jiménez, Leo Harlem y Borja Fernández Sedano para presentar 'Casafantasmas'. Después, hablamos del síndrome de Prader-Willi y Santi García Cremades nos plantea un reto matemático. Por último, Josemi nos cuenta su vida.

Lo que diferencia contar una historia y formar parte de ella es el miedo. En este caso es el miedo de las familias y enfermos del síndrome de Prader-Willi a que se cierre de forma definitiva la residencia Mil Diferencias, el primer centro en España especializado en atender a los afectados por esta enfermedad rara. 

DiGeorge syndrome… what a complicated condition for such a little area of a single chromosome being affected. The condition's descriptive and preferred name is 22q11.2. This is called a microdeletion. Along with microduplications, microdeletions are collectively known as copy number variants. Copy number variants can lead to disease when the change in copy number of a dose-sensitive gene or genes disrupts the ability of the gene(s) to function and affects the amount of protein produced. Other examples of microdeletion syndromes include Prader- Willi, (which is a deletion on 15q), and Cri du chat syndrome which results from a microdeletion on 5p. In this episode, we will review the varied penetrance of DiGeorge syndrome and review its genetic basis. What are some suggestive features found on prenatal ultrasound? What are the associated abnormalities/phenotypes? And how is this condition managed after birth? And why is this also known as CATCH22. We will answer all of these questions, and more, in this episode.

Parder-Willi syndrome is a rare, genetic disease that is characterized, in part, by hyperphagia—an intense and insatiable hunger. People with the condition are driven to constantly eat and seek out food. The syndrome is associated with severe obesity and obesity-related mortality. Tonix Pharmaceuticals is developing an experimental oxytocin nasal spray to treat hyperphagia in people with Prader-Willi syndrome. The approach, to date, has shown promise in animal models. We spoke to Seth Lederman, CEO of Tonix, about Prader-Willi syndrome, the unmet need for treatments, and why he believes an oxytocin nasal spray has potential to treat the condition.

Episode 130: Epigenetics in childhood obesitySaakshi and Dr. Arreaza discuss some principles of epigenetics implicated in the development of obesity in children. Written by Saakshi Dulani, MS3, Western University College of Osteopathic Medicine of the Pacific. Edited by Hector Arreaza, MD.You are listening to Rio Bravo qWeek Podcast, your weekly dose of knowledge brought to you by the Rio Bravo Family Medicine Residency Program from Bakersfield, California, a UCLA-affiliated program sponsored by Clinica Sierra Vista, Let Us Be Your Healthcare Home. This podcast was created for educational purposes only. Visit your primary care provider for additional medical advice.This topic is constantly expanding, and I'm excited to talk about it. It is a fact that epigenetic changes play a role in the development of certain diseases such as Prader-Willi syndrome, Fragile X syndrome, and various cancers. It has been demonstrated that certain foods can alter gene expression in animals, for example. What is epigenetics?Epigenetics is the regulation of gene expression without a change in the base sequence of DNA. Epigenetics means “on top of” the genes. Genes can be turned “on” or “off” as a response to external influences. Obesity and Epigenetics.The link between genetics and obesity is complex, but it is known that epigenetics plays a significant role in childhood obesity. Surprisingly, exposure to environmental factors starts in the uterus. Fetuses are exposed to intrauterine signals that increase their potential to develop obesity. Factors such as in-utero hyperglycemia, gestational diabetes mellitus, and early childhood diet and lifestyle practices can affect the development of the gut microbiome, modify gene expression through DNA methylation, and increase the risk of childhood obesity. These gene expression changes can be passed on to future generations. DNA methylation is the addition of a methyl group to part of the DNA molecule. That methyl group acts as a “chemical cap,” which prevents gene expression. Another example of epigenetics is histone modification. Histones are proteins that are used by DNA as spools to wrap around pieces of information that are “not needed”. The reason why a scalp cell and a neuron are different is that the expression of certain genes is suppressed while other genes are expressed.Factors that influence obesity.Some factors that increase the risk of childhood obesity through epigenetic changes include neonatal intestinal microbiome, C-section delivery, maternal insulin resistance, exposure to antibiotics and other environmental toxins, early introduction of complementary foods, parental diets high in carbohydrates and low in fruits and vegetables, and poor sleep. There are many other factors, but we will discuss only a few of them.Microbiome:The microbiome is a whole new world that is being explored by many investigators. The gut microbiome refers to the diverse community of organisms, including bacteria, fungi, and viruses, that reside in the human intestine. The neonatal intestinal microbiome is established during the first two years of life and may be influenced by factors such as the method of delivery, maternal obesity, and the maternal gut microbiome. Some bacteria worth mentioning are Bacteroides, Clostridium, and Staphylococcus. These gut bacteria are higher in pregnant women who have obesity, and they also have a low count of Bifidobacterium. Infants born to obese mothers have higher levels of bacteria associated with increased energy harvest compared to infants born to normal-weight mothers. The gut microbiome of infants delivered by C-section is different than infants delivered vaginally.Link to antibiotics:Early exposure to antibiotics is associated with the development of resistance in microorganisms. The intestinal microbiota exposed to antibiotics also shows reduced diversity. Antibiotics can decrease the number of mitochondria and impair their function, which is important in maintaining energy metabolism. Evidence suggests that some antibiotics can cause mutations in the mitochondrial genome, and they have a direct effect on the microbiome and influence metabolism. There is a strong association between early-life antibiotic exposure and childhood adiposity, with a strong dose-response relationship. A stronger association has been seen with exposure to broad-spectrum antibiotics and macrolides. Maternal insulin resistance (IR):Insulin resistance means that the mother needs levels of insulin that are higher than normal to stay normoglycemic. It means the insulin receptors are “exhausted” and do not respond to normal levels of insulin. Insulin does NOT cross the blood-placenta barrier, but glucose and other nutrients do. This causes the fetus to have an abundance of glucose that stimulates the secretion of high levels of insulin by the fetal pancreas to stay normoglycemic. The combination of insulin + glucose is the perfect combination for anabolism, adipocyte hyperplasia, and fetal growth. That explains why mothers with insulin resistance deliver larger babies (macrosomia). Maternal insulin resistance is a predictor of infant weight gain and body fat in the first year of life. This is not influenced by the mother's BMI before pregnancy. Maternal insulin resistance causes alterations in gene regulation for lipids, amino acids, and inflammation, leading to long-term health implications for both the mother and future pregnancies.C-section and obesity:C-section delivery is a saving procedure for many obstetrical emergencies. C-sections have improved the survival of larger infants and their mothers. C-sections are more frequent among populations with obesity and sedentary lifestyles. This method of delivery is also strongly associated with childhood obesity. Among many other reasons, whenever a vaginal delivery is feasible, a vaginal delivery is preferred over a c-section.   In summary, we discussed 4 factors that may influence childhood obesity: the newborn microbiome, exposure to antibiotics, maternal insulin resistance, and C-sections. There are many other factors that we did not talk about, but the more we know about genetics, epigenetics, and metabolism, the closer we get to a better understanding of obesity._____________________Conclusion: Now we conclude our episode number 130, “Epigenetics in childhood obesity.” Saakshi discussed with Dr. Arreaza that the in-utero environment can alter gene expression and increase the risk of obesity in children. Some factors, such as maternal insulin resistance and changes in gut microbiome, can be the cause of obesity in some children. This week we thank Hector Arreaza and Saakshi Dulani. Audio editing by Adrianne Silva.Even without trying, every night you go to bed a little wiser. Thanks for listening to Rio Bravo qWeek Podcast. We want to hear from you, send us an email at RioBravoqWeek@clinicasierravista.org, or visit our website riobravofmrp.org/qweek. See you next week! _____________________Sources:Burdge GC, Hoile SP, Uller T, Thomas NA, Gluckman PD, Hanson MA, Lillycrop KA. Progressive, transgenerational changes in offspring phenotype and epigenotype following nutritional transition. PLoS One. 2011;6(11):e28282. doi: 10.1371/journal.pone.0028282. Epub 2011 Nov 30. PMID: 22140567; PMCID: PMC3227644. Available at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3227644/Rachael Rettner, Epigenetics: Definition & Examples, Live Science, published on June 24, 2013, available at: https://www.livescience.com/37703-epigenetics.htmlMulligan CM, Friedman JE. Maternal modifiers of the infant gut microbiota: metabolic consequences. J Endocrinol. 2017;235: R1-R12.Aghaali, M. and S. S. Hashemi-Nazari (2019). “Association between early antibiotic exposure and risk of childhood weight gain and obesity: a systematic review and meta-analysis.” J Pediatr Endocrinol Metab 32(5): 439-445.Yuan C, Gaskins AJ, Blaine AI, et al. Association between cesarean birth and risk of obesity in offspring in childhood, adolescence, and early adulthood. JAMA Pediatr. 2016;170(11):e162385. doi: 10.1001/jamapediatrics.2016.2385.Royalty-free music used for this episode: “Gushito - Burn Flow." Downloaded on October 13, 2022, from https://www.videvo.net/

Clint Hurdle has been involved with professional baseball for a long time. He played in the league for 10 years, where he played for the Kansas City Royals, the Cincinnati Reds, the New York Mets, and the St. Louis Cardinals. And yet, in this conversation, we don't even discuss his playing career. Instead, we focus more on what life was like for him as a manager. Clint was the manager of the Colorado Rockies from 2002-2009, where he helped them go to the World Series, and then he went to the Pittsburgh Pirates, where he helped them go to 3 straight playoff appearances from 2013-2015. He was with the Pirates from 2011-2019. In this conversation, we talk about transitions, and what it was like for him to go from the Rockies to the Pirates. We talk about what it's like to be fired. We talk about divorce and his personal life. We talk about trials and tribulations. All along the way, it will become apparent to you that Clint loves to love. He loves to lead, and he loves to lead with love in mind. He considers himself to be a transformational leader. He builds his managerial process and philosophy around leading with relationships in mind, and it's really at the core of his essence and his being. Clint also is humble enough to talk about some of his imperfections and some of the mistakes that he's made along the way. You're going to find Clint to be authentic, and genuine, to be someone you want to sit down next to and just have a conversation with. At the end of this conversation, I hope you have a better sense of who you are and how you might be able to lead with love going forward.   Clint had a number of incredible insights during our conversation. Some of them include: “There's a time to learn and there's a time to manage” (5:55). “When I got to the park, that's when it was time to learn” (6:50). “Once the game started, I would implore my players to go play. That's why they call it a game” (7:50). “You prioritize before, you prepare before, and once you get to the game, it's time for me to play. It's time for me to step back. Watch. Observe.” (8:15). “I was always infatuated with learning” (10:35). “To hold onto anything purely for the sake of tradition probably isn't the smartest move you can make” (12:10). “Tradition can be a vision killer” (12:20). “Once we've made a tactical error, more often than not we overcorrect” (14:30). “The definition of a coach is to get the player better” (16:00). “When you can let people know that you love them unconditionally, you don't want anything from it, it's not transactional, it's transformational, there's no telling where that relationship can go” (21:05). “How do you earn trust? You show people that you're there for them” (21:30). “There's winning, and there's learning. You only lose when you don't learn” (28:45). “Play with emotion, don't play emotionally” (30:00). “We can't always dictate the circumstances. We always have the opportunity to have ownership of our reactions to the circumstances” (30:20). “There's times when you need to be a thermometer and just report the temperature, and there's times when you need to be a thermostat and set the climate” (32:30). “I establish priorities and I set boundaries” (40:45). “Perception is important” (42:50). “How boring would it be to have ten of me on a staff?” (44:00). “When it all becomes about the ring, it doesn't work well for me” (45:50). “I'm a man of addictions. I have to set boundaries” (50:00). “Other than a dugout, an AA meeting is the most comfortable place I go” (53:05). “Be where your feet are” (55:10). “When you're home, be home” (55:25). “You're never as good as you think you are, you're never as bad as you think you are” (1:00:40). Additionally, you can check out Clint's website and sign up for his devotionals here. You can also learn more about Bat Around here. Lastly, you can search Prader-Willi syndrome if that is something you'd be interested in learning more about. Thank you so much to Clint for coming on the podcast! I wrote a book called “Shift Your Mind” that was released in October of 2020, and you can order it on Amazon and Barnes and Noble. Additionally, I have launched a company called Strong Skills, and I encourage you to check out our new website https://www.strongskills.co/. If you liked this episode and/or any others, please follow me on Twitter: @brianlevenson or Instagram: @Intentional_Performers. Thanks for listening.

Mike Cannon and Anthony Zenhauser join Luis J. Gomez and Zac Amico and discuss Luis learning about point-guarding, loving the kill in video games, Luis going to see Phantom of the Opera with Baby James, the first black actress playing Christine in the play, the mean stages of little girls, Rape Dicks - Mike Tyson getting accused of rape again, the 5 year old with Prader-Willi syndrome, the Historical Figures app that allows you to speak to dead historic figures and so much more!(Air Date: January 25th, 2023)Support our sponsors!YoDelta.com - Use promo code: GaS to get 25% off!To advertise your product or service on GaS Digital podcasts please go to TheADSide.com and click on "Advertisers" for more information!Submit your artwork via postal mail to:GaS Digital Networkc/o Real Ass Podcast151 1st Ave, #311New York, NY 10003Submit to be Luis' sparring partner by sending a video and your information to RealAssOfficial@gmail.com!Real Ass Podcast merchandise is available at https://podcastmerch.com/collections/real-ass-podcastYou can watch Real Ass Podcast LIVE for FREE every Monday, Wednesday and Friday at 11am ET at GaSDigitalNetwork.com/LIVEOnce you're there you can sign up at GaSDigitalNetwork.com with promo code: RAP for a 7-day FREE trial with access to every Real Ass Podcast show ever recorded! On top of that you'll also have the same access to ALL the shows that GaS Digital Network has to offer!Follow the whole show on social media!Mike CannonTwitter: https://twitter.com/IamMikeCannonInstagram: https://www.instagram.com/iammikecannonYouTube: https://www.youtube.com/@MikeCannonComedyAnthony ZenhauserTwitter: https://twitter.com/thezencomicInstagram: https://instagram.com/thezencomicYouTube: https://www.youtube.com/@zencomedy1979Luis J. GomezTwitter: https://twitter.com/luisjgomezInstagram: https://instagram.com/gomezcomedyYouTube: https://www.youtube.com/c/LuisJGomezComedyTwitch: https://www.twitch.tv/prrattlesnakeWebsite: https://www.luisofskanks.comZac AmicoTwitter: https://twitter.com/ZASpookShowInstagram: https://instagram.com/zacisnotfunnySee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

[Click to Listen to Podcast] How a dad listened to what his son (Prader Willi) wanted to do in his life, and they co-founded the company Let's Go Fitness. Whose...

Episode 59 Debra Daniel and Candice Caffas68 year-old Meadville Pennsylvania resident Debra Daniel was last seen on August 15, 2022. Debra, who was Bipolar, lived in her own apartment at the Holland Towers apartment complex on Market Street. Debra, who didn't drive, frequently visited her mom who had recently been admitted to a nursing home. Despite the nursing home being miles from Debra's apartment, she always found a way to visit her mom whether it meant walking, or hitching a ride. The last time she was seen on August 15, 2022, she was at the nursing home. When her friends and family realized she was missing and came to do a welfare check on Debra, they found her apartment clean and everything in order. The bag that Debra had been seen with at the nursing home the day she vanished was there indicating that she made it home to her apartment after the visit. But there was no sign of Debra, and she hasn't been seen since. In Meadville, a town of 12,000 residents, people going missing isn't common, but Debra's case is not an isolated one. It turns out that on July 15, or 16, 2022, a month before Debra vanished, 34 year old Candice Caffas left her Crawford County home on the 9100 block of Mount Pleasant Road in Union Township, south of Meadville, and she hasn't been seen since. Like Debra, Candice suffered from mental illness; a condition called Prader-Willi syndrome, a rare genetic disorder that results in a number of physical, mental and behavioral problems. It's troubling that 2 vulnerable women vanished a month apart in a small town. But are their cases connected? There have also been unconfirmed rumors that a third woman went missing shortly before Candice vanished, but details are sketchy. If there are indeed 3 missing women from that area over a very short time, it's even more troubling.Debra's and Candice's families are desperate to find out what happened to them.In this episode, Debra's niece Anne Puckett discusses her aunt's case, as well as Candice's.If you have any information about Debra Daniel or Candice Caffas, please call the Meadville Police Dept at 814-332-6911To learn more about Debra's case or help in the search for her, visit her Facebook page:https://www.facebook.com/DebrasuedanielYou can also email about Debra's case to:helpusfindher@yahoo.comTo learn more about Candice's case, or help in the search for her, visit her Facebook group:https://www.facebook.com/groups/376387407932527orhttps://www.facebook.com/groups/3966452570247621If you'd like to support this podcast via a donation, you can do so through Patreon here-https://www.patreon.com/MissingPodcastTo contact the podcast or learn more about the cases we discuss visit:Missingpersonspodcast.netFollow us on Social media-Facebook:https://www.facebook.com/Missing-Persons-Podcast-103501877912153orTwitter:https://twitter.com/Missing_Pod

Prader-Willi syndrome (PWS) is a genetic disorder that occurs in approximately one out of every 15,000 births. It affects males and females with equal frequency and affects all races and ethnicities and is recognized as one of the most common genetic causes of life-threatening childhood obesity. To discuss this disorder and what can be done to help people living with it, Jonathan is joined now by Dr. Tony Holland, Professor Emeritus at the University of Cambridge, UK & President of the International Prader-Willi Syndrome Organisation.

(This the third of five re-releases of host Jessica Patay's favorite episodes before we introduce to Season 4.!) Jessica loves this episode because, well, she loves her husband! She is extremely grateful that he has been a dedicated, loving, "hands-on dad" over the 22 years they have raised their kids together. She hopes this will inspire other fathers to have a voice and share their experiences in altered fatherhood.Today on the podcast Jessica and Chris Patay talk about fatherhood, and Chris's journey over the years raising Luke, Kate, and their son, Ryan, who has Prader-Willi syndrome, a rare, genetic disorder. Jessica interviews Chris about the duality of joy and pain in being a father, as well as the vital power of community for dads.JOIN the international community of We Are Brave Together here.Donate to our Retreats and Respite Scholarships here.Donate to keep this podcast going here.Can't get enough of the Brave Together Podcast?Follow our Instagram Page @wearebravetogether or on Facebook.Feel free to contact Jessica Patay via email: jpatay@wearebravetogether.orgIf you have any topic requests or if you would like to share a story, leave us a message here.Please leave a review and rating today! We thank you in advance!

Naiara Fernández entrevista a María Ángeles Zarza, presidenta de la Asociación Española del Síndrome Prader-Wili, y madre de uno de los afectados.

This week Caitlin and Shelby are joined by Amy and her son, Ethan. Ethan is the 3rd of 4 children. He was born with a condition called Prader-Willi (defined below). Several years later, their family grew by one when they adopted Audrey who also has the condition. And in 2010, the family was on Extreme Home Makeover! Ethan also had a service dog named Cotton. Unfortunately Cotton is no longer with them, but Ethan talks a lot about how Cotton helped him and about the proper etiquette people should have when they see a service dog in public. "Prader-Willi (PRAH-dur VIL-e) syndrome is a rare genetic disorder that results in a number of physical, mental and behavioral problems. A key feature of Prader-Willi syndrome is a constant sense of hunger that usually begins at about 2 years of age" (Mayo Clinic). --- Send in a voice message: https://anchor.fm/findinggavinsvoice/message Support this podcast: https://anchor.fm/findinggavinsvoice/support

$5 Q-BANK: https://www.patreon.com/highyieldfamilymedicine Aneuploidy, Robertsonian translocation, mosaicism, prenatal screening, physical exam findings, Down's syndrome, Edward's syndrome, Patau syndrome, Klinefelter syndrome, Turner syndrome, Triple X syndrome, XYY syndrome, Cri Du Chat syndrome, Wolf-Hirschhorn syndrome, Jacobsen and Paris-Troussaeu syndromes, Charcot-Marie-Tooth syndrome, Prader-Willi and Angelman syndromes, trinucleotide repeat disorders, Fragile X syndrome, Huntington Disease, Myotonic dystrophy Type I, spinocerebellar ataxia, and Friedrich ataxia.

Today we are joined by Charmaine Solomon, the Founder of My Possibilities ,which serves adults with disabilities such as Down Syndrome, Autism, Asperger's, Prader-Willi, head injuries and more. My Possibilities is the first full-day, full-year educational program of its kind in Collin County, TX.

In this very special episode (Episode 100!), Jessica shares the story of the night in 2016 she and Chris told their son Ryan about his Prader-Willi syndrome diagnosis. Ryan was 13 at the time of this story. After, Ryan, himself, joins Jessica behind the mic to share his thoughts and questions about the journey in his own words. You may want a few tissues nearby for this life-giving, raw, and heart-lifting episode. JOIN the international community of We Are Brave Together here.Donate to our Retreats and Respite Scholarships here.Donate to keep this podcast going here. Can't get enough of the Brave Together Podcast?Follow our Instagram Page @wearebravetogether or on Facebook.Feel free to contact Jessica Patay via email: jpatay@wearebravetogether.orgIf you have any topic requests or if you would like to share a story, leave us a message here.Please leave a review and rating today! We thank you in advance!

For a lot of people they think about lunch or dinner just before they are about to eat. But for those who suffer with Prader-Willi syndrome, food is an all consuming aspect in their lives that has to be carefully administered. Ann O'Neill is mother to Oisin who suffers with Prader-Willi syndrome and she joined Sean give a glimpse of what life is like living with this syndrome.

About JessicaJessica Patay is passionate about serving caregiving moms and creating authentic communities. She has always fostered deep, life-giving friendships, and is intentional about growing her community of girlfriends. As a caregiving mom herself, this passion for relationships carries on as she gathers women through We Are Brave Together - to encourage them, mentor them, inspire them, and validate their intense and precious journeys.Her own story as a mom to a child with a disability began in 2003 when her second son, Ryan, was born and diagnosed with a rare, genetic disorder called Prader-Willi syndrome.  Within two days of receiving this diagnosis, she received a phone call from a mentor mom from the Prader-Willi California Foundation. Immediately she felt relief and comfort knowing she was not alone. Thankfully, Ryan is sandwiched in the middle of siblings Luke and Kate, both fierce and loving cheerleaders and helpers to Ryan.If Jessica could show up on every mother's doorstep with flowers, chocolate, wine, a witty-and-wise motherhood manual, and… a gorgeous banner that says, "You are not alone"-- she would.  And you never know, she just might find a way to make that happen! . The heart of the We Are Brave Together organization was born out of this desire to connect, encourage, and support.Jessica Patay fueled WABT's growth into an international community of over 1500 moms. In the last four years, she has helped launch over 20 support groups throughout the United States, New Zealand and in Australia. She is the host of our podcast, “Brave Together with Jessica Patay,” found on Apple, iTunes, Spotify, Amazon and Stitcher. Brave Together is in its 3rd season and offers a library of inspirational stories and resources for moms in the trenches of caregiving.Jessica's favorite topics to speak on include –The Power of CommunityYou Are Worthy of Rest, Respite and ConnectionWhat Our Children Teach UsWhat About the Siblings in the Family?The Cyclical Grief in Caring For a Child with a DisabilitySelf-Care is Not a Curse WordConnect with JessicaWebsite:https://www.wearebravetogether.org/Social Media:Instagram: @wearebravetogetherAlso, get to know Erin Cuccio a bit better by checking out her writing HERE.Get started with Instacart today and receive FREE delivery with your first order of $10 or more.  Let Instacart know I sent you and help support the show by clicking HERE. Finally, be sure to SUBSCRIBE and SHARE!  Make sure you don't miss a thing by subscribing on your favorite podcast platform and share so that all your friends can find us too! 

On the podcast today, Amy talks with Shawnee Thornton Hardy. Shawnee is an Educational/Behavior Specialist and the founder of Asanas for Autism and Special Needs and Founder/Director of Yoga Therapy for Youth. She is also the author of “Asanas for Autism and Special Needs: Yoga to Help Children with their Emotions, Self-Regulation and Body Awareness”, and the creator of the C.A.L.M.M Yoga Toolkit.With over 20 years of experience Shawnee has worked with children with Autism, ADHD, Down Syndrome, Cerebral Palsy, Prader Willi, Sensory Processing Disorder, Learning Difficulties, Motor Coordination Difficulties, Language Processing deficits, Mental Health issues, Behavior Disorders & Children who have experienced significant Trauma and Abuse.Amy and Shawnee talk about her journey and how she got started, Her inspiring work with children, Boundaries, Importance of nature for regulation of the nervous system, Shawnee's superpower with kids and so much more.They talk about the following:·        Shawnee's background and how she got started with working with children·        Shawnee's work and how the book ‘Asanas for Autism and Special Needs' emerged organically·        Some benefits of integrating nature into our lives and the impact on the regulation of the nervous system·        Shawnee's thoughts on the impact of teaching appropriate boundaries in children with needs and examples of how she does this in her work·        How Shawnee works with youth who have complex needs due to trauma ·        Shawnee's experience with her own personal trauma, grief and unexpected illness and how it has caused her to shift in her own nervous system and mind as she works through it·        The importance of knowing our personal boundaries, and how to be more embodied in our work as yoga therapists and yoga teachers, so that we can teach others to do the same·        Shawnee's superpower when it comes to her work If you would like to receive the free infographics and handouts that correspond to each episode on the Yoga Therapy Hour Podcast, please subscribe to our segmented email list. You will have the opportunity to determine the Infographic Topics that you would like to receive. When The Yoga Therapy Hour Podcast has a topic that corresponds to your choices, then you will receive an email for that week with the PDF's for download.Topics you can choose from include:• Yoga Therapy & Mental Health• Yoga Therapy & Physical Health• Social Justice in yoga & Yoga Therapy• Yoga/Ayurveda Toolbox• Yoga & Indian Philosophy• Global & Trending Yoga Therapy TopicsClick the link below to subscribe. It takes 10 seconds total.https://amywheeler.com/subscribe Today's podcasts is sponsored by: Optimal Statehttps://theoptimalstate.com/ We have all benefitted from the ancient wisdom of India and her people, so it feels really great to be able to serve in this way. The Optimal State family has pledged on-going support of $250 per month, to go directly to KYM Mitra (www.kym.org). We will collect the monies and gift them each month. Please consider a recurring monthly payment to the fund. Even a small gift or intention makes a difference! If we make more than $250 in any given month, it will roll into the following month's payment. The hope is that we can contribute for many years to come. If you even lose the link to donate, it is at the top of the homepage at www.amywheeler.com also. I will be reporting on the website the progress; how much money is coming in at any given time and where we are in the process of getting this project off the ground.Here is the link for you to get started with your donation. We are so happy that you have decided to join us. We thank you for the bottom of our hearts!Link to click in the description: http://Paypal.me/KymMitraDonationCheck out Amy's website http://www.amywheeler.comTo learn about Shawnee's training website:https://www.asanasforautismandspecialneeds.com/Books mentioned in the podcastAsanas for Autism and Special Needs Facebook:https://web.facebook.com/shawneethorntonhardy/

Kristen and Matthias discuss the trend of parents hosting parties for teens with alcohol. Should your teen be allowed to go? Plus, they discuss new research that seems to answer the decades old question: is parenting toddlers or teens harder? Today's What I Want You To Know is from Jessica about Prader-Willi syndrome, a genetic disorder that causes constant hunger. To submit your own story for “What I Want You to Know” record using this link: https://www.speakpipe.com/selfiepodcast Links + Resources: Floyd Sofa Comfort Works Sofa Covers Barefoot Dreams Robe Harbour Outdoor Furnture Salt + Pepper Dishes on Etsy